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Helen Rochford-Brennan reflects on her time as Chairperson of the European Working
Helen Rochford-Brennan reflects on her time as Chairperson of the European Working Group “Once I saw that Alzheimer Europe was willing to listen and take on board the views of the EWGPWD, I knew we could influence real change. of People with Dementia We did not just talk, our conversations led to action.” In October 2020, Helen Rochford-Brennan said goodbye to her colleagues in the European Working Group of People with Dementia (EWGPWD) after six years in the group; four of these You served as Vice-Chairperson from 2014 to 2016 and then became Chairperson of the group in 2016. What did it mean to you to in the role of Chairperson. She spoke to us about her time hold these positions and could you share with the group and the achievements she is most proud of. one or two personal highlights from the past six years?
You joined the European Working Group of People with Dementia (EWGPWD) in 2014. What were your reasons for joining and what were your expectations? Were these expectations met?
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I joined the group because I believed it was an opportunity to influence policy at a European level. I saw a real opportunity to change policy through the parliament and my professional background advocating for the rights of people with disabilities gave me the confidence to join the group. I wanted to work to make the lives of people living with dementia and their families better and in particular to be a voice for people living in rural areas. There are many spokes on the wheel of life but first we’re here to explore new opportunities and that’s why I was so driven to join a group I felt could make real change.
I expected the EWGPWD to be serious and solemn. I was very apprehensive about language and wondered how this would work! I wasn’t expecting the strong voices of advocacy that I encountered, and at my first meeting I saw their need for change was like mine! I definitely was not expecting the sense of fun and camaraderie either. This experience has been one of the privileges of my life.
Once I saw that Alzheimer Europe was willing to listen and take on board the views of the EWGPWD, I knew we could influence real change. We did not just talk, our conversations led to action. There have been many achievements and highlights over the years. On a personal level accepting the Mano Amiga award on behalf of the group was a wonderful moment, as was attending the European Parliament. Seeing MEPs listen and engage with people living with dementia was very special. Standing beside three MEPs from my home country and knowing their commitment to the cause gave me great hope. Being invited to the European Parliament Disability Forum and watching my colleague Chris Roberts speak at that event made me very hopeful for the future.
But the real highlight has been watching my colleagues in the EWGPWD build their capacity, grow in confidence and influence change in their own countries. I feel very proud to be part of this group of change makers.
What do you think has been the EWGPWD’s biggest achievement so far and what do you hope it can achieve in the future?
The EWGPWD is now an important stakeholder in the European dementia landscape and this is an important and critical achievement in the human rights of people with dementia.
I believe that the EWGPWD, supported by Alzheimer Europe, has been part of a Europewide shift in the mind-set of researchers. Now, funding requires researchers to include the voice of people living with dementia; they are now co-creators and robust partners. I think the leadership shown by members of the EWGPWD will influence research and policy for years to come.
Helen at the International Mano Amiga Awards Helen with Irish MEPs Nessa Childers (left ) and Deirdre Clune (right) at lunch debate, Brussels, June 2017
The group was originally formed to ensure that the activities of Alzheimer Europe duly refl ect the priorities and views of people with dementia, and more recently, to contribute towards research projects in the context of Public Involvement. Do you think these goals have been achieved?
Yes I do. I believe the engagement has been meaningful and not tokenistic. Alzheimer Europe has approached this work in a very ethical manner. It was a great honour to sit on the Board of Alzheimer Europe and I believe this is an important example of shared power and how the voice of people with dementia can infl uence at the highest level.
Of course it is a work in progress, and there is more work ahead – that’s a reminder for my colleagues coming aft er me: no slacking!!
The achievements of these recent years have been considerable.
What are some of the main obstacles encountered in the important work the group does?
The main obstacle has been the language barrier. More people from many diff erent countries could participate if there was funding for interpreters. We must be careful, going forward, that we are fi nding and listening to the voice of the person with dementia and not their support person, if there is a language diffi culty.
As such a passionate advocate for the rights of people living with dementia, what are your plans for further work in this area?
I will never give up fi ghting for the rights of people with dementia, while I still can. I remain a member of the Irish Dementia Working Group and I am on the monitoring committee of the National Dementia Strategy in Ireland. Indeed, they had better watch out, because I have more time now!
I am very involved, too, with the National University of Ireland Galway and the work of the Global Brain Health Institute (GBHI) Fellows. I am passionate about research and I really enjoy supporting researchers.
Spending time with my family and my new dog Lexie is also in my plans, as is enjoying my garden! I feel very lucky to have such a loving family and a supportive community, and although I will miss my European work I am ready for this new chapter.
I want to thank the teams at Alzheimer Europe and The Alzheimer Society of Ireland, I have gotten the most tremendous support. Without their commitment the EWGPWD could not achieve what we have achieved.
Mile Buiochas!
A new group is formed for 2020–2022
On 22 October 2020, following the 30th Alzheimer Europe Conference, the European Working Group of People with Dementia (EWGPWD) begins a new two-year term. Chris Roberts was confi rmed as the Chairperson for this new term, at a meeting of the EWGPWD in June 2020. Chris was the Vice-Chairperson of the group, from 2016–2020. Alzheimer Europe will publish an article in its Dementia in Europe magazine in February 2021, introducing the new group.
